Disoriented in the dark
August 4, 2020 8:06 PM   Subscribe

For a couple years now, I've been experiencing severe disorientation and anxiety in the dark. I've seen two eye doctors and last year I had an MRI. I'm not even sure what kind of dr to see next or how to approach this. YANMD. More inside.

I was born with a significant left eye turn; vision therapy never helped much. I'm aware this gives me problems with depth perception. I am also far-sighted and have an astigmatism.

Other unusual eye things: A dr once said my eyes dilate more than most people's.
One eye dr had trouble figuring out my glasses prescription because they said my eyes were refracting too quickly; I stayed a couple hours and did the refraction a few times but it wasn't right.

In the past couple years, I've inexplicably begun to have issues with darkness.

Example: My boyfriend unlocked his door and I walked into the dark entryway of his house. I began to panic that he was way in a back room doing something about wasn't there to help me navigate his house. I called out for him and he had been right next to me the whole time. Sometimes in the dark things literally seem rearranged.

I am generally much more uncomfortable in darkness than I ever was before, and I feel like my night vision is bad even though it's improved lately. If there's an unusual light source (like one with a weird color), that's especially bad. It's hard for me to hold outdoor conversations with lights like that because it seems like the other person is disappearing or changing.

I realize there could be a psychological component here, like a manifestation of fear of the dark. My vision tests and MRI were all fine, which is reassuring. (I had the MRI en route to a fibromyalgia diagnosis, which might be relevant.) I don't want to see a million doctors, but is there a likely next step?

Alternately, if anyone else experiences this and has found workarounds, please share.
posted by mermaidcafe to Health & Fitness (9 answers total) 4 users marked this as a favorite
I have a condition called a Chiari Malformation that causes me a whole bunch of neurological symptoms. Before I got on drugs to manage the worst of them, and still even sometimes if I'm having a bad symptom week, I have a similar experience. If I close my eyes I become completely disoriented in space. I have fallen before just from closing my eyes because it's like my dumb body forgets which way is up unless I can see it. (If I'm in the shower and washing my face or something I have to touch the wall to keep oriented--fun.) I haven't been afraid of the dark since I was about 12 so I know that's not part of it for me. For me it's only when I close my eyes...but I also live in a city and I'm not sure I've seen actual darkness for 15+ years.

If you haven't seen a neurologist yet then that's the next step. Since you have other vision problems a neuroophthalmologist might not be the worst idea. If you're in/near Chicago memail me and I can rec you one.

In conclusion brains are dumb.
posted by phunniemee at 8:36 PM on August 4, 2020 [2 favorites]

I don't know any of the medical possibilities, just want to tell you not to blame yourself with a "fear of the dark" theory.

When I've had this, it's because my night vision with glasses (as opposed to contacts) was becoming insufficient (depth perception being an issue, as you also experienced), and I was simply unable to see well enough to feel safe. It took me one very unpleasant evening to eventually understand what was going on - you can memail me if you want to commiserate with stories - but the point is, the solution involved not being in extreme darkness anymore without contacts, even though my day vision with glasses was fine.

Your solution might turn out to be more complicated than mine, I don't know, I hope you can get a specialist if you need one, but my point is: don't suggest to anyone that the issue might just be a psychological problem on your end. It isn't.
posted by fingersandtoes at 8:59 PM on August 4, 2020 [1 favorite]

I am glad to hear you've had an MRI because someone close to me also had this problem, also had an (intermittently) turned eye from a very young age, and hers was determined to be due to a meningioma which was pressing on the occipital lobes of her brain. The doctor's theory was that the meningioma was stable for a long time but then started growing again for some reason. She also occasionally had severe hives rising to the level of dermatographia which no one was ever able to relate to any kind of environmental exposure.
posted by jamjam at 10:26 PM on August 4, 2020 [1 favorite]

Weird vision stuff may mean Opthamologist for evaluation then what's called a Nuero Opthamologist which is a neuro/eye specialist. I am seeing a neuro opthamologist soon for weird eye things. I don't have more info, but it's a specific specialty that people may not know about.
posted by Crystalinne at 10:54 PM on August 4, 2020 [1 favorite]

How does it feel when you close your eyes? Do you the same way as when you step into a dark room? What happens if you close your eyes upon entering a dark room? Does it make you feel better or worse?

I guess I'm wondering if you could dial down the fear reaction by closing your eyes, so your brain 'expects' darkness and wont try to frantically make sense of things you cant see well (which may be why colored light makes people disappear or change - your visual cortex is getting unusual input and it doing a poor job of parsing it, which of course makes you uncomfortable and scared). Immediately close your eyes upon being in dark or weird lighting, give yourself a moment to let your other senses kick in, and then open your eyes. Repeat as needed, and maybe you can extend the open eye time without your brain telling you to panic. Retraining the fear response should help regardless if they symptoms are psychological or not. They may not go away, but at least you'll teach yourself not to panic.

The only other thing I can think of is if you've been taking massive amounts of B12, it can have weird effects sort of like Chiari Malformation on your prioperception which keeps your body oriented in space when your eyes are closed or you're not looking directly at the body part you're moving.

Have you seen a neurologist? Just in case?
posted by ananci at 6:52 AM on August 5, 2020

I have carried a flashlight in my front pocket for decades. It's small and very bright. I use it every day, for stuff like not stepping on cats on the way to bed after turning off all the lights, or not being able to read the thermostat. I feel like carrying your own light could really help you, whether or not you attack the problem in other ways too.
posted by fritley at 7:09 AM on August 5, 2020 [4 favorites]

I had a similar problem when I started having ocular migraines, ended up seeing a neurologist after an optahmologist noticed problems with my optic disk. I had idopathic intercranial hypertension. ie increased pressure in my skull of unknown cause it effects my optic nerve. There was no "cure" per se but with practice if I concentrate I can keep a sense of where everything is in the dark for short lengths of time, ie long enough to get to a light switch, strangely it is less bad if I take my bifocals off even in what I think pitch black. Brains are weird man.
posted by wwax at 9:30 AM on August 5, 2020

This doesn't seem to be what you're experiencing, but you might find it interesting to read about Developmental Topographic Disorientation, a condition where people can't orient themselves and get lost even in very familiar surroundings.
posted by danceswithlight at 11:19 AM on August 5, 2020

I've experienced something a little bit like this, with one eye losing vision / "greying out" temporarily, which I imagine would be even more disorienting in the dark or low light. It did happen to be the symptom that set me on a path of tests for a blood clot and then a CT scan that discovered my meningioma, but it apparently was not related. However, I have heard what I experienced referred to as "smartphone eye" (e.g. UMiami Health News, Mar. 29, 2018), essentially caused by concentrating with one eye on a screen for too long and then looking away. I also have a neuro-ophthalmologist for a variety of reasons, and I appreciate how broadly their practice has covered my collection of issues and symptoms.
posted by katra at 1:21 PM on August 5, 2020

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